Behcet's and acupuncture

[Lara1]

Just wondering what people's experiences with acupuncture are. I had my first session a week ago and have mixed feelings about it. Not sure if I should give it a second try..

[Stm252]

Sometimes I actually feel worse after and think I flare. Sometimes I think I her relief. It's hard to say. Not really sure I can find a connection. I find the massage I get with it gives me the most relief frankly.

[Blearyeyed]

Was you acupuncture for pain from ulcers etc or for joint or GI pain?

I would be interested to hear more details of your or others experience with acupuncture or massage and how it affected your symptoms for a few days afterwards, good and bad .

I am just waiting for my first appt. at UK CoE next week and confirmation ( hopeful?) of Behcets but a number of years ago , after my first pain clinic appt. for Trigeminal neuralgia relating to face swelling and absesses , they sent me for a free acupuncture session. I think it was one of those subsidised schemes were the NHS/ Govt. were trying to prove they were progressing to be more holistic and user friendly!! Ha, Ha!

I felt awful, it was painful being done (in my neck, scalp, ears and face) and about hour after I had terrible burning, pins and needles , especially in my ears and cheeks. The next day , all areas I was punctured had swelled like hot red insect bites that were painful and lasted about a week. I didn't go back but maybe it was just the wrong method used or placed in the wrong places for my symptoms.

I sometimes have chiropractic massage using my own moisturizer to stop any reaction and that can give me joint and back pain relief for a few days , the length of relief isn't worth the cost.

Could it be that these sorts of complementary treatments will give more benefit when I am on more suitable BD medications or have others found them to cause flares too?

[Stm252 in reply to Blearyeyed]

Mine was for fatigue, GI, joint, malaiase and headaches, mylagias. (not ulcers) my accupuncturinst works a lot with people with these types of diseases and sometimes only uses ONE needle. The mistake is nor working with you and using a ton and following the standard protocol. Depending on how flared I am I can make it 3 mins or 25 max which obviously is much shorter than a standard session. If it helps, I usually get reliwf either my sleeping more or having more energy; headache resolution for like a day or two; improved GI for awhile. Never yet has it helped worth pain.

[Blearyeyed in reply to Stm252]

Thanks,

Yes, my acupuncture was for the nueralgic pain and stiffness in my head, neck and face. I did have to shorten the session and had , had the standard treatment with a number of needles.

I think part of the problem with complementary treatments , and conventional treatment add ons , like physiotherapy , and even pain clinic treatments is that the people giving you the treatment use a basic ," one size fits all", form of treatment , especially at an introductory session, just knowing the area of stiffness and pain they are to work on without knowing the facts about the disease they are meant to be helping, or what extra damage could be done by treatment that doesn't suit the illness and origin of pain.

They assume that you can keep going back and forth for appointments and that from their point of view of treatment, we can let them take time, and go through trial and error , like a test mouse, until they find something that suits.

In reality, this is not possible for any autoimmune disease sufferers , in the way it might be for other muscle , skeletal, GI or neuro pain, because the wrong attention can flare up our symptoms and lay you out for a few weeks. Your body clearly reacts to the wrong help as though it is under attack. It is not practical or pleasant for any of us to go through this experimental stuff with people who know nothing about specific origins and causes of pain for different diseases. It adds to the stress , physical and mental, which as you know only makes matters worse.

I particularly found with the physiotherapist , that even after I explained that the initial exercises she was giving me I had tried myself , and that they had made me ill , she still said I had to begin on those exercises first. An hour later, she escorted me, dizzy and bright green into the waiting area to my friend and said I could give it a miss the following week, suffice to say I didn't go back after the three week flare of pain that ensued.

Perhaps , rather than just assuming that standard forms of treatments may be beneficial and putting us through stress, conventional and complementary medicine groups should start compiling information from worldwide data , or doing tests of treatments on people who know what the affects could be , and finally come up with stuff which is disease specific and more helpful.

It would be really helpful if disease societies passed data on about good centres and practitioners of complementary treatments who specialise in helping people with disease specific pain and had a page on their websites you could visit so we could all get beneficial help worldwide, even when travelling.

[Stm252 in reply to Blearyeyed]

Love love your response.

[SCMW]

Hi, I’ve had acupuncture prior to diagnosis. I had one session of traditional acupuncture and could not take the pain. I’ve had a great osteopath who used western acupuncture primarily around the neck & shoulder areas, I’ve had it around the face for migraine (headache literally melted away) and across the buttock muscles when very tight. It’s helped on that context, didn’t always enjoy it but found symptoms settled more quickly once over. Hope that helps.

[Stm252 in reply to SCMW]

What does the osteopath do? Is it like chiropractic Care?